Sunday, January 25, 2009

(Second in a series of occasional posts on pregnancy, children, and chronic illness.)

It was wonderful to hear from so many of you at different stages of decision-making, pregnancy, and parenthood. The feedback from my recent post on pregnancy and chronic illness unraveled so many interesting angles, from questions of inheritability to adoption to child care, and I’m interested in pursuing all of these in more depth.

The most compelling and complicated question remains, of course, can you versus should you. However, the theme I’d like to explore is the sentiment that “it takes a village” that my friend mentioned in a comment. I’m partly drawn to this because I think it’s emblematic of living with chronic illness in general, and also because I’ve been thinking a lot about health care reform and chronic illness.

After all, anyone who lives with chronic illness already knows the juggling it requires, the multiple roles the people who love us take on for us, and the complications it adds to life decisions.

Pregnancy, infertility, adoption, and parenting are extraordinarily challenging and life-changing no matter your health status; factor in the demands of chronic illness and my immediate thought is yes, it really does take a village. If what makes effective health care is a hot political topic right now, than carving out a niche for the many women living with chronic illness who are pregnant or want to be parents is appropriate.

There are both medical and personal implications of this notion of a village. If there’s anything I’ve learned from twenty-eight years of being a patient, it’s that when different doctors and specialists work together, the patient benefits. I love that my (new!) primary care doc, my lung doc, and my other specialists know each other and confer with each other about my care.

Many chronically ill women have high-risk or medically intensive pregnancies, and just like women in high-risk situations who did not have additional existing chronic illnesses, their needs demand close monitoring and thorough, attentive care from their obstetricians. But for many women with chronic illness, the best situation is one in which all of the doctors who make up their health care team work with each other—whether it’s discussing risks of certain medications on fetal development or the best way to handle a disease exacerbation in late pregnancy, this communication is essential.

But of course this medical village is only the beginning. Issues of infertility and high-risk pregnancies aside, what I’ve heard from many of you, and what corresponds with what I discovered when talking with patients for my book, is that caring for the child once he or she is in your life is an immense challenge. (Notice I didn’t say once you’ve given birth, because no matter how you decide to become a family, you’re still trying to balance the same problems.)

“How can I care for a baby on the days when I can barely take care of myself?”

I’ve heard that question posed many women with many different types of chronic illness. Some are incapacitated by pain, other battle life-threatening exacerbations, but the universal question remains the same. And the answer, of course, is that you can’t do it alone.

So who would make up your village? Would spouses, relatives, and good friends be able to bridge the gap for you? If you needed regular help with child care, could you afford it? If you need to maintain some sort of income after maternity leave, does your job have any flexibility?

More simply, do you have a plan in place so that you can be the parent you want to be without completely sacrificing your own health?

It isn’t easy, and in an ideal world the cost of chronic illness and health insurance and child care and all those variables we have to consider would be more reasonable. In an ideal world, we could count on our bodies to be somewhat more reliable, and we wouldn’t have to choose between the immediacy of the present and the potential long-term outcome so often.

But we’re not there, we’re here. So whether it’s assembling a medical team that works for us or figuring out a back-up plan for those days when our bodies fail us before it happens, building a village that is strong and restorative is the best thing we can do.

And in the end, aren't so many of us already living proof that yes, it does take a village to thrive?

5 comments:

I have had Chronic pain for 19 years- since I was 10 years old. Since my life was turned upside down at such an early age by chronic illness, at times it feels like I have never known life to be any different than this. Because of this I don't think I dwell on the things I can't do. I do just about anything I want (within reason.) I made this life with the pain always present- rather than pain suddenly coming and taking my life away.

That said, I always knew I would have children. My daughter is 16 months old, and I admit that I would not be able to do take care of her as well if my husband weren't able and willing to come home from work to help me through emergencies and flare ups.

My biggest concern is passing this pain on to my children. I've decided that new treatments are coming at an amazing rate, and who knows if untreatable pain will even be an issue for my children. I hope not. But my daughter is so brilliant and beautiful, that I can't imagine life or the world without her.

Thank you for this post. I have been recently diagnosed with four chronic conditions and am having the "to concieve or not to concieve" battle with myself right now. Its good to know others have the same struggles and that some come out on the other side with healthy, happy children.

I have fibromyalgia and I am the mother of 3 boys. God had a sense of humore, huh? :) I was diagnosed with the fibromonster between kids 2 and 3. Before we planned to have the third one, I had a LONG discussion w/ my ob/gyn to see about pain control options, etc. and to make sure he was comfortable taking care of me. I also have some wonderful friends and family that helped with the older boys on days I felt really bad. Honestly, our decision was based on our support system and my awesome doctors. I know I would be taken care of. I'm one lucky girl! :)

Supposedly with Ankylosing Spondylitis, getting pregnant is hard on the body, esp if the spine is fused....and supposedly I have AS, and that and my other health issues really make me think about having babies in the future. If I can't, will my husband and I be able to afford adoption. Ahh.....the future scares me!!!!